Saturday, January 07, 2017

A quick update while I can hopefully connect

Firstly, I have to say that I’m getting extremely pissed off at my
inability to connect to the internet and thus stay in touch. The service offered
in the hospital just won’t let me pay for access. I have been able to access
their free ten minute preview, but Gmail obviously doesn’t like the ISP or
whatever and the last time much of that time was spent verifying that I am who I
am before I was cut off, so I’m pre-pre posting this, will have copied it and
hope I can post it in time. With regard to my ordered smartphone from BT, I
haven’t even received the courtesy of a text message, so have no idea what’s
happening. I would phone them, but my pay-as-you-go mobile only has a tiny
amount of credit on it and I know you have to pay to call 0800 free phone
numbers. And the only way I know how to top up my phone is via the internet
...

So, I was brought back to the hospital last Thursday and following a blood
test was found to be anaemic again so underwent a couple more blood
transfusions. The doctors have also continued to try to find the cause of my
blood’s inability to clot, giving me many drips of various drugs in an attempt
to solve the problem. Then they bought in an expert haematologist who quickly
discovered that my blood completely lacks something called Factor F, which aids
clotting. Apparently it’s extremely rare for anyone to lack Factor F. Anyway,
she specially ordered in some Factor F pills, and all being well my biopsy
should eventually take place on Tuesday. Up until now all the treatment I’ve
received has been for anaemia and trying to find a way of making my blood clot.
I’ve received no treatment whatsoever regarding the cancer, so hopefully
following the biopsy and it’s results they can start with the radio and
chemotherapy.

Also, since New Year’s Eve I’ve been in a private ward following an extreme
moment of human kindness by some nurses after noticing that I was going
completely stir crazy at having to listen to the constant inane chat of my then
fellow ward companions and their equally tedious visitors. It’s been wonderful
to enjoy the peace.

And that’s all the news for now – my biopsy will hopefully take place on
Tuesday and following the results, treatment proper will eventually begin. I
hope you’re all having a great New Year.

Hooray for Nurses giving you your own room and glad you're still with us.

Sadly if you were in an Oxford hospital I could probably get you some internet joy, they're thankfully quite integrated with the university's setup. I was in the churchill last week and until I finally gave up and went to dig out a phone, spent no small amount of time examining the luxo light fittings while the doctor had disappeared playing hunt-the-consultant.

Regarding having quietness.. my assistant in work quite liked the idea of having a "star chart" covering her improvements over the year (yes, we're big kids). She's done really well, however there's one row that has got exactly zero gold stars. That row being "Days without mindless noise". She's off for a week and I'm still debating adding them just because I now have the place to myself.

Greetings, Kevin. I do hope you've finally reached a turning point in your struggle with this illness. So far you've been ruggedly independent, and have politely turned down offers of assistance from your readers. I would like to suggest, however, that you view the situation from the other side, and understand that there are some people who derive great pleasure from helping others, and that by turning down their services you deprive them of that satisfaction.

Hopefully when you leave the hospital, social services will make arrangements for some basic assistance for you in terms of food and housekeeping when you return home. But if you could just write a post sometime indicating where you live (Arbroath itself? Dundee?) and the name of a home-care service or shop where you do business (or even better, contact information for a trusted relative/friend), that might allow a handful of your longtime readers an opportunity to be of some assistance.

Usually there's an option on your mobile to top up your mobile credit. Not all pay as you go phones are the same, though. I have a pay as you go for when I'm in America and that's how I do it, but my phone is pretty old.

Anyway, I am still sending you healing thoughts. I hope you get your health problems at a manageable level soon. xoxo

Still thinking of you and relieved for the update, but my frustration grows for your plight. I know your level of frustration must be immeasurable. I wish there were more I could do than send you good thoughts and hope. There is no loss of pride in asking for a little help when it's needed. That's just called resourcefulness and practicality. I hope the F factor works and you gain more X factor as well to make you stronger and better. Enjoy your peace and quiet and good luck with the next steps in this fight.

Very, very best wishes for a quiet, yet rejuvenating time in the hospital. Allowing yourself all that frustration is definitely not conducive to a quick recovery. Do you have a 'patient advocate' at your hospital? or a nurse/ social worker/ healthcare assistant to whom you could explain your dilemmas? Or, as has been suggested many times - might you consider allowing someone to handle some of these issues for you?The longer you let these irritations fester, the harder it will be for your body to recuperate. Peace, calm and humour at the most successful pathways to beating cancer. Please get better quickly!

Dear Kev, we are both sorry to read of all of your problems, all we can say is that we wish you a speedy recovery, and hope that you know so many out here care for you, for everyone that leaves a comment there are countless numbers wishing you well, best regards Stan and Diana.

Sorry to hear you're having so much trouble, but glad to hear from you again. I've been checking each day to make sure I keep up. I hope things go better for you next week and you finally get tests. Wishing you the best.

So great to hear from you, Kev! I'm sorry your new phone hasn't been delivered, and that internet connection has been such a problem. For a man like you with a true genius for the internet,it must be horribly frustrating. As to that, I'm with so many others, urging you to find a patient advocate who can help you with those issues.

Medicine has come a long way. My ex husband was given six months in July of 2015. With a new treatment, his tumor is shrinking. There's always hope. And you have so many people praying for you, sending good thoughts, etc., that's got to help, too.

Hey Arbroath. Glad you're receiving treatment. Regarding your phone, maybe ask a nice nurse to top up the credit for you so that you can make calls. I think it's logical to let you be able to make calls.

It's so good to hear from you, Kev. If nothing else, we'd all love to chip in and get you some connectivity for our own selfish purposes to keep up with you. Please consider it. And we'd all love to make your life easier in any way we can.

I, too, agree with Minnesotan. Wishing that there was some way to help you, given all the pleasure I have received from reading your blog. I'm relieved to see an update, and I have all my fingers and toes crossed that you will be able to connect with the internet soon. *if only* you would let someone help...

Kev, so glad you started getting answers! You lack Factor F, I have factor 5 mutation - I produce clots for no reason. Between the 2 of us we could make a normal person! I hope the meds normalize your blood and I hope they can begin the cancer protocols soon. Wishing you the best in your fight.

Hospitals can be terrible, but it sure sounds like you're being cared for by really great nurses and capable doctors, with or without huge entourages. Do yourself a favor though, if you get sent home again before you're totally up for it, ask them to set you up with the necessary support.Starving does not make your situation any easier.

As always, best wishes for a full recovery from someone you never met but have affected via your blog. Please take the recommendations of your medical staff and get well. Your health is more important than anything.

Sorry to hear all of your frustrations and glad to hear you are getting treatment. Please let others help you if they wish, it does not make you any less of a person for accepting help when you really need it. You have given so much joy to others like me over the years and it will give so much pleasure for other to be able to help you in return. I can't help you from way down in NZ but I do wish you all the best!! Take care

OMG! I haven't checked in for a while and missed quite a lot! Kev, I hope you're on the mend soon. You've brightened a lot of my days for many years and I wish only the best for you. Sending virtual hugs.